Sarah’s heart is racing as she sits in her doctor’s office awaiting her test results. The visible facial rash and joint pain that appeared after her baby was born have been extremely challenging to live with. The answers to what seem like months of waiting, months of referrals, and months of being stuck like a pincushion are all dwindling down to this moment. Could this be the confirmation she was hoping for? At last, the doctor utters the words, “It’s positive. Your ANA is positive.”
Miles goes back to his doctor’s office after his mysterious symptoms keep getting worse. He knows something is wrong, but what could it be? They have eliminated every possible cause except one. He clings to the hope that they can finally put a name to all his suffering, all his fatigue, all the time he has had to be on the sidelines instead of playing his favorite sport. The doctor comes in and says, “Well, we really thought it was lupus, but your ANA is negative.”
Above are two very common scenarios in the lupus community. At Kaleidoscope Fighting Lupus, one of the top questions we get asked is, “If my ANA is negative, does that mean I don’t have lupus?” In this blog, we want to clarify the facts and fiction of your ANA and what that means for a diagnosis and beyond.
Fact vs. Fiction
FACT: ANA stands for your antinuclear antibodies. Antinuclear antibodies are cells that target normal proteins by mistaking them as foreign or “dangerous.” When one has a large presence of autoantibodies or ANAs in his or her blood, it could signal that the body is attacking itself, which may lead to autoimmune diseases, including lupus, and lupus overlap diseases.
FICTION: If your ANA is negative, it means you do not have lupus.
FACT: More than 95% of individuals with lupus will test positive at some point in the duration of his or her illness. However, about 20% of people who have SLE will develop a negative ANA during treatment.
FICTION: If your ANA tested positive, then it tested negative, you should stop treatment.
FACT: Sadly, this happens a lot with people in the lupus community. If your ANA was positive and then it tested negative after you started treatment, that does NOT mean you should stop therapy. If you stop treatment, it can lead to symptoms coming back and could cause a flare.
FICTION: Only people who are ill will have a positive ANA.
FACT: By itself, a positive ANA test does not indicate the presence or severity of an autoimmune disease. In fact, certain medications can cause a positive ANA result. Ironically, most people who have a positive ANA do not have lupus. A false positive simply means that for whatever reason the antibodies are present in a completely healthy individual.
FICTION: ANA is the only test for lupus.
FACT: True, this test is highly relied upon for detecting lupus. However, there is not one test alone that will determine a lupus diagnosis. Physicians take into account 11 different criteria set forth by the American College of Rheumatology when making this determination. These include:
- Rash on the bridge of the nose and cheeks, often called a butterfly rash
- Raised red patches on the skin, called a discoid rash
- Sensitivity to sunlight or Photosensitivity
- Mouth or nose ulcers
- Heart or lung changes
- Nervous system changes
- Kidney changes
- Blood changes
- Antibodies in DNA
- ANA present in the blood
FICTION: Your doctor needs to keep testing your ANA every time you have blood work.
FACT: Dr Thomas who wrote The Lupus Encyclopedia states “Once a person who has SLE is ANA positive, the doctor does not ever need to check the test again.” He goes on to say, “That is why it is important for patients to keep records of their initial lab results and doctor’s notes.”
FICTION: If your ANA is positive then you must have lupus
FACT: A positive ANA can be due to many other diseases. Some of these diseases include scleroderma, Sjogren’s syndrome, polymyositis/dermatomyositis, mixed connective tissue disease, autoimmune hepatitis, cancer and juvenile arthritis. Even some viral infections can cause a healthy person to have a positive ANA.
So the long and the short of it is, if your ANA is negative, it may have been positive at some point or you are part of the 5% who have never had a positive ANA. As always, be your own advocate. If you feel your symptoms are not being treated, or that your doctor is dismissing your concerns, try to see another doctor.
For more detailed information on Antinuclear Antibodies and lupus diagnosis, see our post on Diagnosing Lupus and Lupus Tests.
Sources:Sources: rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Antinuclear-Antibodies-ANA, mayoclinic.org/tests-procedures/ana-test, rheumatology.org/Practice-Quality/Clinical-Support/Criteria/ACR-Endorsed-Criteria, The Lupus Encyclopedia, John Hopkins University Press, Donald E. Thomas, Jr. MD, FACP, FACR, 2014
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